Tuesday, June 29, 2010

Alex not only likes letters, words, and numbers, but he is blessed with an uncanny ability to store them in his mind. Every afternoon when he and I watch the game show Jeopardy together, I am treated to a glimpse of how gifted his memory is, as he reveals how much he has learned in a variety of subjects. I am often amazed that he knows things I would not expect him to know, including pop culture. Moreover, I have accumulated a gold mine of useless information in my memory over the years, and yet he knows things I don’t, such as remembering all of the U.S. Presidents in the order they served. When I ask him how he knows certain trivia, he can tell me specifically where he learned the detail by citing the title of a reference book or the website where he read it. Sometimes he can even inform me of the year when he learned the fact. He explains to me that he can see it in his mind.

Since he much prefers reading nonfiction to fiction, Alex has learned a great deal from reading textbooks, almanacs, encyclopedias, and dictionaries for fun. From the time he was little, he has usually taken at least one book to bed with him, holding it the way most children cuddle beloved stuffed animals. We can easily identify his best-loved books: from sleeping with them, the pages are often bent or curled. At times I almost wonder if he has learned things by osmosis as he slept. All of this reading, coupled with his excellent memory, made him a careful proofreader who catches mistakes in books that editors have missed. In addition, he possesses outstanding spelling skills because he can see in his mind the way words should be spelled. This ability to remember the order of letters has also enabled him to develop proficient keyboarding skills because he knows exactly where all the letters are on the computer keyboard and never needs to look at them as he types.

Along with all the reading he has done, Alex’s love of math has inspired him to study numerical concepts and patterns and then to commit them to memory. He has a fascination for prime numbers and has memorized the first 350 primes. Similarly, he has enthusiastically researched the concept of pi and then committed the first 1433 digits [“exactly, not approximately,” according to Alex] to memory, spouting them off the way most teenagers would repeat lyrics to their favorite songs. He greatly admires those people whose names he has found on the Internet who have memorized more pi digits than he has. Aside from these more academic studies, Alex also uses his ability to store numbers for more practical purposes. Using a phone book and the Internet, he has memorized area codes and zip codes for the U.S. and can usually accurately identify the state when given the code number. We put this to the test when unknown numbers come up on our caller ID and when mailing letters and bills at the post office. Even more helpful is that he remembers everyone’s age and birthday in our family, saving me from having to look up that information in my birthday calendar book. Somehow, I like to think that Alex’s gift for storing and retrieving numbers and patterns is a combination of Ed’s mathematical strengths and my organizational skills. Alex has taken that blend and made it his own, enjoying watching the numbers as they go by in his mind.

“I remember the days of old. I ponder all your great works and think about what you have done.” Psalm 143:5

Sunday, June 27, 2010

All kids go through stages, and Alex is no exception. Alex’s stages, however, have unique twists to them because they often have ties to his sensory or OCD issues. Others are related to his desire for control. When he was little, he created routines, as many children with autism do. For example, at bedtime, he insisted on having four cups, each a different color (red, yellow, green, and blue) and each with a different drink: water, juice, milk (before we knew he had sensitivities to casein, a milk protein), and Sprite. He would line up the cups in his order, take a sip of each, and then he was ready for bed. After watching television shows, he intently watched the credits and insisted on saying, “Bye bye” as each name appeared on the screen. More recently, when words appeared on the tv screen, he analyzed whether any anagrams existed for these words. If not, he would say, “NO WORDS,” a phrase he learned from an anagrams game on his handheld electronic dictionary. Since time is important to Alex, he had a routine several months ago where he had to check our microwave clock before going to the bathroom. No other clock would do; this meant that he would often turn off the cooking cycle so that he could check the “official” time, which was annoying. These various routines gave him a sense of order, though.

At times Alex develops obsessions that make him a tyrant about others’ behavior. One summer, he decided that no one could use contractions; for example, if we dared say “don’t” or “can’t,” he immediately reminded us that we were to use “do not” or “cannot.” I’m not sure why this formality arose, but we were glad when it disappeared. Another summer, he did not want people to cross their legs for some reason. He would try to uncross our legs. Rather than battle with him, we attempted to remember not to cross our legs. If we forgot, however, he tapped our knees to remind us of our infraction. He also went through a phase where high gas prices really upset him, so if we drove past a gas station, he would let his displeasure be known from the back seat by whining, sometimes by throwing things, and when very agitated, slugging one of us in the front seat. We learned every route around town that would avoid gas stations so as not to invoke the wrath of our backseat driver. For someone who likes letters and numbers, Alex surprisingly will not eat with us or take vitamins if one of us is wearing clothing with words, numbers, or logos. He calls them “bad imagine clothes,” and we have learned the proper dress code if we want him to take vitamins or eat with us. It’s easier than debating him.

Other stages Alex has gone through have been directly related to his sensory issues. When he was little, he would rub his clothing tags as he sucked his thumb. He would also chew on his shirt collars, especially when new teeth, baby and permanent, were coming in. This was a nuisance because he needed clean shirts several times a day, and the chewing ruined several of his shirts. His current habit of twirling his hair is much easier to handle. A recent phase that seems to be fading is his need to imitate people’s voices, especially children. He then developed an elaborate routine where he would talk about dates and then try to recreate the voice he thought he had at that time, for instance, saying 1997 in the higher-pitched, or as he called it, “little voice” of when he was five years old. As that stage has gradually gone away, he developed the need to tear up little pieces of toilet paper when he is using the bathroom. I try to remind myself that it took him years to toilet independently, and I’m pleased that he can do so. Nonetheless, I will be glad when the little tp pieces stop getting tracked through the house, making it look like a hamster cage and requiring frequent vacuuming. Considering how well-behaved Alex usually is, these are just minor inconveniences. As I always half-jokingly say, every phase will eventually disappear—only to be replaced by another equally annoying one.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:2

Thursday, June 24, 2010

Along with excellent health, thanks to the various biomedical interventions we have done under his doctor’s supervision, Alex has also been blessed to have strong, sound teeth. At his current age of 18½, he has never had a cavity. His healthy diet, daily calcium supplements, and cooperative attitude toward brushing and flossing his teeth have contributed toward his not needing any fillings. In addition, we have been fortunate to have worked with two dental groups specializing in pediatrics and special needs patients; both have provided him with wonderful care.

We began taking Alex to his first dentist when he was three years old. This dentist was a very sweet and gentle man, who patiently coaxed Alex to open his mouth by telling him he needed to count his teeth. Since Alex loves numbers, he was willing to cooperate. His staff members were very understanding of Alex’s sensory issues, allowing me to sit in the chair with him during x-rays to hold his head still. They would also adjust the exam chair and then have him climb in it because the movement bothered him. In addition, they had him wear sunglasses during the exam and cleaning so that the bright light wouldn’t bother him. The only criticism I had of them was that they gave Alex a grade for his dental hygiene. Since I was brushing his teeth at that time due to his fine motor delays and sensory problems, this was a critique of my work, not his. Nonetheless, Alex cried when we got a C one time. After that, I never looked at the grades, nor did I show them to him. I just told him that they didn’t give grades anymore.

When Alex was in his teens, his dentist moved his practice to another city, so I looked for another local dentist whose practice included special needs patients. While this dentist isn’t quite as warm as the other, he exudes a confidence that reassures me. He’ll tell me, “Now, Mom, we’re not going to worry about that unless we need to. He’s doing fine.” Moreover, his hygienist, who has a very pleasant demeanor, is fantastic with Alex, calling him affectionate names and complimenting him on how cooperative he is for her. Because Alex has had such good experiences throughout the years at the dentist, he—unlike most people—really enjoys going to have his teeth cleaned and checked. For instilling a positive attitude in Alex about going to the dentist instead of dread and fear, I’m very grateful to both dentists and their staffs.

“For it was I, the Lord your God, who rescued you from the land of Egypt. Open your mouth wide, and I will fill it with good things.” Psalm 81:10

Tuesday, June 22, 2010

Aside from family, one person who has remained constant in Alex’s life is his doctor, who has been a huge blessing because she has helped him tremendously. After Alex was diagnosed with autism, I began looking for a new doctor for him who would be willing to try biomedical interventions I had read about online. The Autism Research Institute reported good results DAN [Defeat Autism Now] doctors were having with nutritional therapies, and this was something I wanted to pursue for Alex. DAN doctors impressed me because many of them were parents of children with autism and/or treated many of these children in their practices, and I believed that while they would be aggressive in treating the problems, they would not do anything to cause harm. Fortunately, I found a local family practitioner who emphasizes nutrition and preventative medicine and began taking Alex to her in 1998.

While Alex’s doctor is not a DAN doctor, she has been very receptive to trying the DAN methods whenever I have brought her research I’ve found; as she often says, “It’s worth a try; it’s certainly not going to hurt him.” She and I have also agreed that we would only run rather noninvasive tests which would give results that could be addressed, including the following: food allergy panel, organic acids test of urine, analysis of his hair and stool, heavy metals urine test, and blood profiles. In doing these various tests, we discovered that Alex had food sensitivities to glutens and caseins, yeast and bacterial overgrowth in his digestive tract, vitamin and mineral deficiencies, as well as toxic levels of arsenic, aluminum, lead, and mercury in his system. (As a side note, none of these tests were covered by insurance, but that’s another story.)

As each test revealed a new issue, she developed a treatment plan, and we implemented each new intervention one at a time so that we could monitor Alex’s reaction. Like many children with autism, Alex responded well to the strict gluten-free and casein-free diet and has been on it since 1999. In addition, his doctor determined which vitamin and mineral supplements would benefit him. Fortunately, Alex is a good eater, and he has been remarkably cooperative regarding his diet and about swallowing the various supplement pills he needs daily. In addition, she treated his yeast and bacterial issues with a combination of medicine and probiotics. Eliminating the heavy metals involved two years of chelation therapy by orally taking DMSA, a sulfur compound that binds with heavy metals and removes them from the system, on a regulated schedule. Along with these treatments, she regularly performed cranial therapy, a gentle manipulation of his head, which calmed him. Because of these interventions, Alex has made good progress and has become what all parents want for their children—to be happy and healthy.

“A happy heart is good medicine and a cheerful mind works healing, but a broken spirit dries up the bones.” Proverbs 17:22

Sunday, June 20, 2010

Looking through Father’s Day cards, I noticed several include a sentiment something to the effect, “Though I don’t say it often enough, I appreciate/admire/love you, Dad.” While this kind of card indicates a lack of communication in the relationship, perhaps this comment best illustrates what Alex feels toward his dad. I know without a doubt that Alex adores Ed, but because of his language and social issues, he cannot easily express either verbally or through affectionate gestures how much he does appreciate, admire, and love his dad. Alex doesn’t initiate hugs or kisses, but will give them if asked, and he only says “I love you” if we say it to him first. Nonetheless, he shows his love in other ways, and for us, that is enough.

In the rare times that Alex has been sick or has had nosebleeds, he has relied upon the calm reassurance of his dad, who gently reminds him that everything will be all right, all the while, holding his head over the commode or a bucket to vomit or holding an ice pack on his nose. (I, on the other hand, clean up any mess left behind and get him fresh clothes or sheets, knowing that he prefers Daddy’s easygoing nature to Mommy’s high energy at those times.) In the middle of the night, when Alex has awakened, Ed has often stayed beside him until he fell asleep, Ed’s very presence soothing him. When I give Alex his twice weekly vitamin B-12 injections, he likes to lean his head on Ed’s shoulder for comfort and never lets out a whimper. He trusts that Daddy will always take care of him.

While many fathers can enjoy watching their sons play sports, Alex’s motor delays denied Ed this pleasure. I’ve wondered whether hearing about his nephews’ successes in playing various sports has ever bothered Ed, but he has never indicated as much. Instead, the two of them have shared interests in politics, the stock market, math, and weather; Alex starts discussing these topics with Ed by asking, “How about nice conversation?” Lately, Alex has shown more interest in sports, watching NASCAR, baseball, and basketball with Ed on t.v., and Ed has patiently tried to teach Alex the basics of baseball and basketball when they go to the park together. Even though Ed has to remind Alex repeatedly to watch the ball, he never gives up on him. Through the years, Ed has learned greater patience and compassion through much testing in many ways. On this Father’s Day, I’m very proud of both of my guys for the men they have become by loving each other.

“Fathers, do not exasperate your children; instead bring them up in the training and instruction of the Lord.” Ephesians 6:4

Thursday, June 17, 2010

Alex has a mathematical viewpoint; he would prefer to quantify rather than to describe. With people, he would like to look at their driver’s licenses to discover what he sees as the important facts: birth date, height, and weight. However, since most people do not want to reveal their ages and sizes, he has learned not to ask these questions. He once told me that he wanted to be a doctor because doctors can ask people how old they are, how tall they are, and how much they weigh without being considered rude.

He has even devised his own measurement systems. For example, he uses “dropodos” to rate how deep a person’s voice is. My mom and I have matching dropodos scores of 344, while Alex gives his dad a 600 and my dad a 646. He apparently now has the deepest voice with a dropodos of 681. Another system he devised years ago was the “car” ranking, which is based on distance and the number of turns we make in the car to go someplace. Going to my parents’ house, a ten-minute drive, is “car 9”; going to the university, a fifteen-minute drive, is “car 11.” A similar system he invented is for shopping. He notes how far away items are from the door. In Walmart, the yarn is farthest from the door; it gets an “86 miles away” ranking, while in Menard’s home center, the far-flung garden area is “75 miles away.” Alex understands the concept of actual miles; this is just his method for noting store layouts.

In addition to real and invented measurements, Alex uses percentages to compare and contrast. His favorite food, shrimp, rates 100%, while his second favorite, meatloaf, earns a 99%. Popcorn, his least favorite food, not surprisingly, rates a 0%. If he really enjoys an activity, he will eagerly tell us that he “liked it one hundred percent!” Similarly, he rates people’s qualities. For instance, he rates his dad as 95% smart, whereas I earned a 98% for intelligence. He gives himself a 99% smart ranking, and only God surpasses him as 100% smart. He is pleased that God knows everything and talks about asking Him questions when he gets to heaven. In another rating, according to Alex, his dad tops me in humor: Daddy gets a 96% for being funny, while I’m at 95%. Alex thinks he is not only smarter than both of us, but also funnier at 98%. He ranks my uncle—who is a funny guy—as the funniest human he knows at 99%; only God tops Bud at 100%. I like that he recognizes God’s sense of humor as well as His wisdom; I’ll bet that God smiles when He hears Alex recommending Him so highly.

“But even the very hairs of your head are all numbered.” Matthew 10:30

Tuesday, June 15, 2010

Before we knew that Alex had autism, we knew he could read. By the age of two, he could recognize and recite the alphabet and numbers, and by the time he was three, he could read aloud words from flash cards. When we went to stores or restaurants, we thought it was cute that he would notice signs and logos and say, “EXIT” or “VISA” as he read off the familiar words. Unlike most kids, he often preferred looking at cards instead of the presents that came with them. He also was held in rapt attention as he watched the credits of t.v. shows, and he loved the game show Wheel of Fortune with all its letters and words. While he liked his picture books, he also studied books without pictures, including my college psychology textbooks--not a typical pastime for a preschooler.

When Alex was diagnosed with autism, he was also identified as having a rather rare condition known as hyperlexia, a precocious ability to read. While the ability to read is impressive in a preschooler, as the hyperlexic child matures, this savant skill becomes less obvious because all of his/her peers can read by the age of 6 or 7, as well. For Alex, he seemed to learn language backwards: most children learn to speak before they can read, but he seemed to learn written words before he could say them. This was actually a blessing because we could use written words to teach him to speak.

In addition to providing many books for Alex to read, we also bought him a Franklin Spelling Ace electronic dictionary that allowed him to type in the words he couldn’t figure out how to say. I put Post-it notes on objects around the house and would say the words for him, hoping that, like Helen Keller and “water,” we could make a breakthrough. He understood that words have context and meaning, and his vocabulary has grown with time. As one of my seventh grade students reassured me years ago when I was explaining Alex’s hyperlexia, “Mrs. Byrne, if he can read, he can do anything!” Indeed, reading has been an asset in helping Alex overcome his speech delays.

“A word aptly spoken is like apples of gold in settings of silver.” Proverbs 25:11

Sunday, June 13, 2010

For years, my family and friends have been telling me that I should write a book. I knew what I would write, yet I resisted their encouragement because raising my son, who was diagnosed with autism in 1996, has consumed so much of my time and thoughts that I wasn't willing to take on another project. Of course, the book I would write would be about raising a child with autism and all we have learned on this journey, in hopes that it might help other parents. My son Alex is now eighteen years old, and I'm still not ready to write that book yet. I keep waiting to discover how things will turn out for my main character.

Lately, Alex has been obsessed with the idea of what his earliest memories are. He has watched videotapes of his childhood, has poured over the hundreds of photos we took of him as a child, and has asked us repeatedly on a daily basis about how far back he can remember. All the while, he carries around a picture of himself at age four. He tells us that he remembers in April 1996, when he was four years old, he got a clock at Kmart. For most children, this would be insignificant, but for Alex, who uses numbers and measuring devices to make sense of the world in terms of time, dates, temperatures, stock market statistics, and even the hundreds of irrational pi digits he has memorized, this seems a fitting first memory.

During this recent search for Alex's younger self, he has enjoyed hearing stories about when he was very young because they help him reconstruct a time he cannot remember. Now I realize how important it is to write his history, if for no one but Alex, so that he can see how far he has come. For those who wanted me to write a book, this blog is as close as I can get to that right now. I'm busy remembering for Alex, so that he can piece together his life experiences so far.

"So teach us to number our days, that we may gain a heart of wisdom." Psalm 90:12

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.